Wednesday, 29 August 2012

So this blog is about the big Transplant assessment!!

I had been so excited for it, for weeks i have been counting down, its all i had been able to talk about! But then Monday i just completely changed. I was so nervous, it had just hit me that they might say no! Either im to unwell or come back and have another review in 6 months time, or that because of my Cepacia and Asspergillis i have it would be to risky and they wont do it. I was crying on and off all day, making myself breathless to which point that i was using my Oxygen all day and my heart rate was 149! I was thinking of all the tests i had to have too there are so many! I got told about this one where i would have to out a tube (NG) down my nose to test my reflux. I remember me trying to put an NG in before, i just cant pass i started panicking about that too. But one friend told me there is a different test they can do for that, so relaxed a bit. But that night i didnt sleep at all, and every time i did nod off i just saw me having all these tests done. I had to be at Papworth for 9 O'clock, when i got out of bed i just wanted to jump back in and stay there all day. I was in such a mood. 

Me and Ben got there and got shown to my room, then i had bloods taken straight away,and there was loads of blood to be taken!! My arm felt dead after! Then i saw the Transplant Co-Ordinator and he gave me my timetable for the 2 days...i only had to have two tests!!! Lungfunction which im used to and a heart scan which iv had before! then just to see the doctor and thats all! I was panicking over that for no reason lol 

Then my mum came up aswell when i saw the Dr and the team. We got there at half 1 and didnt get seen until 5!  

So we saw the nurse which told us all the things that could go wrong and treatment for after, i already knew much so wasn't really anything i didnt know. Then we saw the Dr and he told us the same as the nurse then said 'so would you like to go on the list?' I could of jumped up and hugged him but i just said yes please!! :) he said the surgeon is next door and wants to talk to me, so he said he will get the paper work sorted and i can come back next week to sign them and then il be on the list :) 

While writing this i just had a phone call from the transplant team, and they said my Anti bodies has changed since last time. Before they were 15% which means there 85% chance of finding a match. But today he said they are now 70%. So that means theres now 30% of finding a match. Im still positive but it is a kick in the teeth...

Thank you for reading and all my support and messages you have been giving :) 

138 Hours until im on the List!! 

Monday, 20 August 2012


20!!!! Yes thats my new number, im now at 20% Lungfunction! :D Yessss! I gone up 2%, it going up each time so im very happy about that, i think doing the bike everyday for 11 mins has been helping, so il continue to do this when im home :) 

Il be aloud home tomorrow, it will be my 11th day on ivs and im aloud home without them too :) 

thats all about me for now but i would just like to mention a friend of mine, she has Cf too and is currently on the transplant waiting list. Shes hoping to start something new this week to help her breathing, it does the breathing for her so she can rest.She has been waiting for a bed to come in to start it for a week now, Papworth keep promising her a bed then changing their mind. This is making her more stressed out which is putting more strain on her lungs. I really hope she gets a bed soon and more importantly gets her new lungs as soon as possible! 
Here is her blog if you would be kind to read and send her some support

Thank you for reading again! 

191hours until transplant assessment

Sunday, 19 August 2012

News,a rant and maybe something special :)

Well iv found out i dont have the Gene G551D, i have one common one and a rare one, not sure on there names but theres no drugs been made for them ones yet boooo :( But they told me when there is il be able to do a drug trial for it, so hurry up and make it please!!! 

My infection leverl has gone from 66 to 23 :) so hopefully another couple of days and im going to ask if i can go home.. My mum and brother are going away for a few days and i wanna try and sneak there with them lol

The weather has been so nice this weekend i hope you have all enjoyed it! I only packed jeans and leggings to come here with so i was sweating yesterday!! lol I went for a few walks, much to the disgust of the nurses, as i had to come of my drip (im on it 24/7) my Doc in the week said i could have the weekend off it and come and go as i please... But that dr wasnt here this weekend and she didnt make a note of it. So after alot of stressing the nurses let me go out for a bit, i only went to the canteen with the family. The nurses were making it out as a really big deal. Then when i came back they tried to put me back on it and i said no. Ben was coming up later and we wanted to go out for a bit. The nurses were telling me no i cant go back out, i was getting so annoyed at this point i asked to speak to the on call Dr and he just said its fine for me to go out, and asked me why were they making a big deal out of it, so im glad it wasnt just me thinking it. So after me and Ben came back they wanted me back on the drip, Im on Cef on a drip 24/7...Just before she put me on the drip she pushed 3gs of Cef in me then started the 3gs drip... I kept thinking that doesnt sound right, so i asked to see the on call Dr again, it was a different on this time and i told here what the nurse done, she got my chart out a looked it over saying i should of had them at different times not both together!! She stopped it and told them to start it again in 4 hours time... Im sooooo glad i ask about it! Really do not like that nurse, i miss my other nurses on the other side of the hospital lol 

something random happened this week ... I was just sitting waiting for ward round to see the doc and one of the Cf nurses came in and said 'you can say no,but we was wondering if you would like to be in a documentary?' Oooo i got excited straight away and said yes!!!! She said the producer is outside and would like to talk to me, she came in, she looked really young! like my age, she didnt stay for long but just asked about me and how my life is then she said she is going to come back next week to explain more about it. She left an the Cf nurse (Lindsey) came back in and said it will be the programme One born every minute and 24 hours in A&E. 

I got so excited and rang my family, but since then iv been thinking if i should do it? Im mean i really don't mind sharing everything with you on here because you read it you cant see me and you don't see me struggle with walking or coughing until im sick. So i keep thinking do i really people seeing me like this? Its such a big part of my life il be letting people watch. I know it will be advertising for CF and Organ Donation, iv just got to think about it.... Il have to look my best though which means shopping!! I don't mind that part lol So il see the producer next week and talk to her, see where that takes us! 

So il update again in the week to tell what happens :)

215hours Until my transplant assessment!! :D 

Tuesday, 14 August 2012

Last few days..

Day 4 Of being in hospital...

Iv been exercising on the bike since iv been in and iv broke my record time! iv now reached 11 mins :) I did use my oxygen so i wouldn't get breathless and it did help, i was fine after and didnt cough much. So im going to keep at it and try and increase the time by a minute each time :) 

Iv not been happy being here this time round so far. I came in on Friday night because they 'want me in fast' so i got put on a old persons ward, In a small room where i had no shower room soi had to share with others (which isn't good for cross infection) Then i saw the on call Dr as all my normal ones weren't there. He didnt know what meds to put me on so waited until the morning to deicide. Morning came and i hadn't even have my port accessed yet, no sign of seeing any doctor soon either. I got moved to a different room, still on the old peoples ward but this room had its own bathroom :) much better! Then it was about 6 O'clock that i finally started my meds, i was so annoyed! I didnt really need to be in until that evening. But anyway that's done now, im on 3 different IVs and one of them is a drip which is 24/7.. Il be on it for the whole time im here. Which is annoying to have a drip stand with me where ever i walk, i keep forgetting im connected and walking away from it then it pulls on my port, does hurt a bit lol 
Then on Monday i got woken up and told i had to move rooms again, this time on a different ward, the room was in a corridor and was the smallest room ever! it had a telly but it was so high up on the wall i couldn't reach it to turn it on!! The bathroom an shower room was down the hall, so each time I needed a wee i had to walk with my drip stand down there. Very annoying lol The nurses told me i would be in that room for a few days, i really wasn't happy and told them i would go home and wait until a room was available. But then after a few hours of sleep i was woken and  told i was moving back to the other room again!! I was so fed up, i haven't been able to unpack yet and still cant because there planning to move me again!!

So thats whats happened over the last few days... there also going to see if they can move my Transplant assessment so i can have some tests now while im in instead of going home and coming back a few days later for them :) 

So we shall see!! Thank you for reading! xxxx

Saturday, 11 August 2012


So im back in hospital again... 

At my clinic on Monday i told the Dr i wasn't feel my best, i have been coughing a lot more, using my oxygen more, much more breathless and not having any appetite :( i didnt do my LF as i didnt wanna set my coughing off again, my back was in agony from coughing, iv pulled so many mussels its just complete pain! They said i should come in and i agreed but they had  no beds available at the time so i just had to wait until one came free, which was yesterday. 

So im in now, haven't started any iv's yet which im not sure why? i just gotta wait to see the dr.. as its the weekend its only the on call drs which are on, and there very busy all the time! 
So while im in there going to try and see if i an have my Transplant assessment early :) and also see if i have a gene called G551D. I asked them to check this for me. On of the cf girls i follow has this gene and shes just been put on this new amazing drug called Kalydeco. Heres a bit of info on it -

 A new medicine has become available. It’s called Kalydeco and it treats the cause of Cystic Fibrosis (CF). CF is caused by having just 2 faulty genes. There are different types of mutations of the faulty genes. Kalydeco works with the gene mutation that I have by fixing the fault. In America, this medicine has been approved and available for use since the end of January. People there are having remarkable, some even miraculous, results!

It has been a very exciting time for all of us who have CF and have this mutation. We have been following all the success stories closely. However it looks like we are going to have huge problems in getting this medicine to the people who need it here in the UK. It is very costly, and even though it saves lives and would increase the quality of life for so many, the NHS and hospital drug and therapeutics committees have to agree its funding. At the moment all the treatments that are available for CF treat the consequences of this disease. Kalydeco is DIFFERENT - it is a gene modifying medicine. It is a little blue tablet taken twice a day that fixes the fault!! There has been nothing like this for CF before and therefore NEW FUNDING should be put in place. There is no comparison between this medicine and what we have had available up until now!

So im hoping i have this and can try it out :) no harm in that! The girl i follow is on the transplant list and her LF was 14% when she went on it and she has been on the tablet for 3 weeks now and her LF is now 23% and she hasn't needed to use her oxygen since then either! its amazing!! She has now asked to come off the transplant list too! 

So my mission in here this time is to find out if i can go on this :) 

I would just like to say thank you to everyone who has sent me there pictures of themselves with there donor cards :) and also to people who have signed up :D Thank you very much! :)